For the past 15 years, doctors have been saying things to me. A partial and imperfect list compiled from memory, writing and emails.
He said: We think something is wrong. He said: She is almost perfect. He said: This will be an easy surgery. I will cut it off and that will be the end of it. He said: That was a complicated surgery. And I do this all the time. He said: We have seen something like this before. We don’t know what to make of it. They said: Here are the current challenges. He said: This is a very tricky bug. She said: The head is a great spot for an IV in a baby this young.
They say: I don’t know. We don’t know. I don’t know.
He said: This is very important real estate. He said: We will have to see if this issue forces our hand into surgery. He said: Intramedullary & Mediastinal. He said: Neural foramina. She said: This is a non-validated result that we have to confirm independently. She said: Yes. Finally a match and a label. He said: The risks and benefits are.... He said: The challenges with research are limited understanding of the disease, little interest by the main medical body and research centers & little funding of these syndromes. He said: Horses are better than zebras. He said: I would expect symptoms to be similar, if this were to happen again.
He said: I would emphasize that much of this moves slowly - at the pace of months or years, not weeks or days. He said: I just heard today that the clinical trial is open here. He said: This won't hurt her a bit. He said: The MRI looks pretty unchanged to me. He said: She's a complicated girl. He said: The other risks and benefits are...... He said: I hope it helps - please let me know. He said: I am glad she is stable and I hope she improves. He said: I am sorry that this new finding is here – we will do our best to get a good plan in place.
They say: We don’t know. I don’t know. We don’t know.
He said: I will use the femoral artery. He said: I will use part of the hip bone. He said: You're not listening. He said: The window is closing. He said: I have the pictures of the surgery. He said: I think we need to intubate. He said: I want to make this right. Can I call you right now?
They say: We don’t have an answer to that question.
He said: I'm not sure what happened. It makes no sense. He said: This was the right decision. He said: This will take time. Hopefully it will get better. It will be slow. He said: In the lab, the mama mice eat the babies who have the disease. They know something is wrong. They said: Tell us if the improvements stop. He said: Hopefully this medication will help. They said: I don't think there's anything else we can do. He says: I don’t know.
He says: I am continuously humbled by the way that you remind me that you know way more about this than we do. He says: I will never be smart enough, quick enough to answer the questions that you have asked and that you keep asking. I am sure of this.
And the doctors will keep saying the things. And life goes on, as it does. And I will keep asking all the questions.